Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

[anciendaze]

Depends how different the fabrication process is anciendaze, the complexity of the thing is no doubt vastly lower
but they might not be able to use the same tools to produce it

It might seem good value for money even at those prices but doing things in a manner more akin to how a regular blood test is done might be 10x cheaper

How many tests are you talking about? I'm talking about hundreds, even thousands. The background work has already been done. Going in the other direction, a sort of grab at everything in blood or CSF can find thousands of different biochemicals, but may require a tandem mass spectrograph run. I don't expect major drops in price on those.

 

[ash0787]

nah you wouldn't do it that way, they will find a specific thing which is universally significant and directly
test for it with simple chemicals, they said this somewhere but I dont know exactly

 

[Kati]

If you use beta blocker while on the TTT or any of those, you will not see the real issues. I still ask what is my new AT while in beta blockers and haven't gotten any answer from any of the doctors and to be honest not wanting to pay the 800$ just to find out (do a new excercise test while on the bb)

I have done 2 sets of exercise tests, one with beta blockers and one without. (i don't recommend doing exercise tests just for fun- disability or research are good reasons but still, be careful)

With betablockers, my heart rate never went over 120. It was quite frustrating.
Without betablockers, my heart rate went from 75 reclining, to 120 sitting on the bike, not pedalling, and a max heart rate of 175.

If you want an exercise test done for AT, quite honestly, try a simple arbitrary number like 100 and test it. If you still get symptoms while your HR is near 100, then redue to 90.

 

[snowathlete]

This is probably the most striking (and heartbreaking) tweet of today's presentations at IACFSME:

https://twitter.com/i/web/status/791640500579233792

Among these 100, how many were patients/caregivers? How many were doctors? How many were researchers?

Why wasn't Francis Collins there? If he is serious as he tells us he is, why doesn't he show up to get educated about the disease and see where things are firsthand?

 

[viggster]

Why wasn't Francis Collins there? If he is serious as he tells us he is, why doesn't he show up to get educated about the disease and see where things are firsthand?

It's more important that Vicky Whittemore is there...she's the one putting together the RFA's at the behest of Collins.

 

[Kati]

Why wasn't Francis Collins there? If he is serious as he tells us he is, why doesn't he show up to get educated about the disease and see where things are firsthand?

I need to say that Dr Fluge was addressing during patient day, so there may not have been that many drs or policy makers. Few patients can make it to IACFSME due to health, finances or other reasons. It sounds like the professional conference was better attended.

 

[Kati]

What is really striking to me from reading all of the abstracts and from reports from the conference is there is no mention of auto-antibodies. I wonder if these would not be an important topic to mention considering the pathology, POTS, and metabolomic abnormalities?

 

[Gingergrrl]

What is really striking to me from reading all of the abstracts and from reports from the conference is there is no mention of auto-antibodies. I wonder if these would not be an important topic to mention considering the pathology, POTS, and metabolomic abnormalities?

Kati, so there was no mention of auto-antibodies at the conference? Do most of the presenters view auto-antibodies as part of ME/CFS, a subset, or a different illness? Am so baffled on this topic still.

 

[halcyon]

Lily Chu - Deconstructing Post-Exertional Malaise

ORIGIN
- term around for 50 years - arose from Ramsay
- CDC used it in 19946
- Term is confusing
- In 2000 - meeting

I've never seen the term used in any of the early ME literature, if anyone has a source for that I'd love to see it. As far as I understand, the term was introduced by Anthony Komoroff circa 1993 and it was noted to occur in only 50% of CFS patients, hence why it wasn't in Holmes '88 and is optional in Fukuda '94. To be honest, I'm not sure many people with classic ME would recognize themselves in the way he described it:

Typically, the patient tolerates the physical exertion reasonably well, and may even feel energized during and immediately after the exertion. However, 6-24 hours later the patients feel ill...

The term itself couldn't be more clear if it was only used literally, instead of used to refer to exacerbation of any symptom after exertion.

 

[Kati]

Kati, so there was no mention of auto-antibodies at the conference? Do most of the presenters view auto-antibodies as part of ME/CFS, a subset, or a different illness? Am so baffled on this topic still.

I am not at the conference so I don't know for sure but there are no abstracts relating to auto-antibodies and no reports regarding auto-antibodies. Perhaps it is a area of research that needs to be explored further. I think the OMF Sevrely ill study is touching that but no results as of yet.

 

[Sushi]

so there was no mention of auto-antibodies at the conference?

There was a tweet about autoantibodies a few pages back.

 

[Gingergrrl]

Thanks and I was just curious. I know most patients have not had these tests but I wondered how big of a role the researchers felt they played (outside of the research at the Charite).

 

[snowathlete]

It's more important that Vicky Whittemore is there...she's the one putting together the RFA's at the behest of Collins.

I'm not saying VW shouldn't be there. What I'm saying is that it would be good if Collins himself turned up. I presume he turns up to conferences about other important diseases, why not this one?

 

[BurnA]

I'm not saying VW shouldn't be there. What I'm saying is that it would be good if Collins himself turned up. I presume he turns up to conferences about other important diseases, why not this one?

What about Nath ? I'd like to see him at a conference.

 

[Kati]

What about Nath ? I'd like to see him at a conference.

i think folks like Collins go to conference if they are invited as speakers. He probably have very little time of his own as it is. As for dr Nath, he may already be in the audience, can't be sure. i would expect Walit to be in the audience and take copious notes.

 

[RL_sparky]

Kati, so there was no mention of auto-antibodies at the conference? Do most of the presenters view auto-antibodies as part of ME/CFS, a subset, or a different illness? Am so baffled on this topic still.

One of the potentially most important tweets from the conference in my opinion:
Cort Johnson ‏@CortJohnson Oct 28
#IACFS/ME #ME/CFS - Fluge - studies suggest that immune system is producing anti-mitochondrial antibodies that are whacking the mitochondria

 

[Gingergrrl]

One of the potentially most important tweets from the conference in my opinion:
Cort Johnson ‏@CortJohnson Oct 28
#IACFS/ME #ME/CFS - Fluge - studies suggest that immune system is producing anti-mitochondrial antibodies that are whacking the mitochondria

Do you know what these specific autoantibodies are called or how they are tested for (or is this still in the experimental stage)?

 

[Seven7]

I have done 2 sets of exercise tests, one with beta blockers and one without. (i don't recommend doing exercise tests just for fun- disability or research are good reasons but still, be careful)

With betablockers, my heart rate never went over 120. It was quite frustrating.
Without betablockers, my heart rate went from 75 reclining, to 120 sitting on the bike, not pedalling, and a max heart rate of 175.

If you want an exercise test done for AT, quite honestly, try a simple arbitrary number like 100 and test it. If you still get symptoms while your HR is near 100, then redue to 90.

I had my AT measured without bb and it was 115bpm.
On bb I get PEM even if I don't reach to 115bpm. The doctor told me once you are on Bb you have to adjust for AT but the relation is not linear ( if without bb rhr was 101 but AT is 115, when on bb RHR is 64 your AT will not be 78( the 14bpm gap I had without the bb).

So I was " ok doctor if is not linear then what is the formula?" " he said don't worry about that" of course the doctor was a POTs doctor which they think as you excercise the AT will increase. I which is not the case w CFS found the hard way after trying to increase for 5 years.

So now I am stuck w the question. It was easy to avoid PEM before bb. Now not so easy for me.

 

[RL_sparky]

Do you know what these specific autoantibodies are called or how they are tested for (or is this still in the experimental stage)?

I haven't seen that they have yet publically identified it. I can say other researchers are finding auto-antibodies though.
Another tweet I found:
Cort Johnson ‏@CortJohnson Oct 27
#IACFS/ME #ME/CFS: Mella - because Rituximab works in some patients suggests that autoantibodies are involved (apparently not identified)

Cort Johnson ‏@CortJohnson 21h21 hours ago
#IACFS/ME #ME/CFS: Could be autoantibodies or something else. Davis not surprised it's taken so long to find autoantibodies: difficult to do

 

[anciendaze]

nah you wouldn't do it that way, they will find a specific thing which is universally significant and directly
test for it with simple chemicals, they said this somewhere but I dont know exactly

I've been waiting for a simple biomarker for quite some time, and I'm not seeing it. I am seeing multiple metabolic defects, which differ from patient to patient. Somebody ought to be testing the whole citric acid cycle, just for example, so doctors will have some idea which stages are defective. This alone covers quite a range of biochemicals.

The chip approach is not limited to a single disease. I expect it will provide useful guidance in treating a range of disorders which are hard to distinguish clinically. This will also spread the costs over a number of patient populations, and reduce expenses caused by malpractice. I already know people who have spent well over $1,000, on diagnostic tests alone, which turned out to be of no value. I know people who have spent $100,000 on ineffective treatment. Loss of life is normally given a higher value for insurance purposes, and inadequate diagnosis definitely has caused this.

You need to compare these costs against the cost of new technology which could eliminate many mistakes.